Starting Chemo January/February 2025
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Can those of you who have started chemo share your experience with the office process? Like, my appointment was at 10:15. I come in, get blood work, then sit and wait for the doctor. It's currently 11:30. It is so stressful that I still have at least five hours once I even get to the dogblasted chemo chair! Which could easily be another hour!
Is this typical?
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@bonkster my bloodwork last time was at 745. I waited around until 9ish before I even got back to the infusion room. I didn't have to see my doctor and it still took that long. I had had my bloodwork in my chart for a while before I was called back. What I was told was that, at least at my clinic, my chemo meds are not even made until my bloodwork comes back. It is all weight and level dependent. My chemo infusion didn't even start till probably almost 10. Every time I've seen my onc, he's always been late... but with that being said, he had never wished during his time with me, which is am sure is why he is late for me. Next Monday I do bloodwork, see dr, then do infusion. He has to clear me before i can do chemo. So I feel like its just a backlogged system where every stair steps on the other thing.
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Well, I had an allergic reaction to the taxotere on Tuesday. They stopped treatment and my doctor said I need to do the rest in the hospital. However, she came in to tell me that while I was still coming out of the reaction so I didn't have the wherewithall to fully understand or ask any questions. When I left, they said the hospital would call me for my Tuesday chemo. They also set me up to see an allergist.
It was the allergist who explained the process. I had assumed I'd be in the chemo room at the hospital, but they will actually be admitting me and I'll be in a bed. They will slow my drip down to several hours versus one. He also prescribed me more meds to start 3 days prior to chemo.
As of yesterday (Friday) I had heard nothing from the hospital or my doctor. I called my doctor at 9, left a message saying I needed to know if I was having chemo Tuesday because I had meds I needed to start taking. I called back 6 hours later to check up and they basically said the doctor would call when she called and they didn't know what to tell me about the meds.
In desperation I called the allergist. They reached out to my doctor's office and managed to find out that they had left messages with the hospital but hadn't heard back.
So now I'm left, already a week delayed, not knowing if I'm even having chemo Tuesday!
I have made the choice to start pre-medicating in the hopes I will be going in Tuesday because when I thought about how I'd feel if I got a call Monday to set it up and had to postpone because I hadn't known to start taking the meds, I know I'd lose my 💩.
I don't understand the lack of compassion and understanding that this is already a hard process that they could make easier by simply communicating!
End rant!
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@bonkster Where are you getting treatment?!?! I feel that's totally unacceptable. There should be a PA or NP to at least answer your questions. Im at MDA and had a different, yet similarly frustrating, situation with my neutropenia shot needs. As I told my nurse navigator, they work at a cancer hospital dealing with complex, life threatening illnesses. This isn't a family practice where they deal with antibiotics and steroid creams. They should be acclimated to high needs and urgent responses. Advocate for yourself. If that means you call every hour, call every hour. It's literally what I did with my medication issue.
Im so sorry this is your situation. Remember you have one life, and you only have this very moment. Do what you need to do to take care of yourself. This can still be done with grace and understanding, yet firmness and accountability for those who provide your care. Good luck!!!
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@bonkster thanks for the ping! So yes I did see my Dr and I’m on TC regimen for 4 injections - same as you I think? I actually just did my first injection today. Waiting for the cold cap contraption to come to temp. So I can finally get home today…. Damn I felt like an icebox with gel packed booties and gloves plus the cap! I just feel like the harder part is around the bend over the next few days, it’s definitely weighing on me. But I am also thinking of it as a science experiment… we shall see! Hope all are getting through it ok.
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@heavans my worst post symptom by far was back pain from the day after injection. The post chemo wasn't that bad for me so hopefully it'll be the same for you. Just stay hydrated!!!
I will warn you, I had a powerful shed two weeks after treatment. I am wearing my wig regularly now. It was panic inducing the first night, but I kind of got used to it.
@lg2009 thank you for your encouragement. I finally got someone at my doctor's office who is helpful. I was supposed to go to the hospital for my second treatment today. My doctor yesterday said they'd call me this morning to let me know either way, which they did not. (But she also said she'd call me back yesterday with more info and did not.) So having a name of someone at the office has helped. She said I will be going in tomorrow. So 8 days delayed but happening.
I plan to badger the living hell out of them with questions tomorrow!
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So I had my first round of docetaxel (taxotere) a week ago. I had a hypersensitivity reaction almost right away- got super flushed, felt tightness and heaviness on my chest and difficulty breathing, pain in stomach and back. They stopped the drip and gave me Benadryl and something else and that seemed to take care of it. I still had some nausea but less than the last type of chemo. The worst side effect of this chemo is the bone and joint pain. I had some with the other chemo that would flare when I did too much but this is worse and constant. Thankfully my team prescribed me something to manage it. My mouth and throat are also more dry and sore and it affects my taste more this round. 2 more rounds to go. It’s really starting to feel like a battle. I spend most of my days in bed as I’m too tired to do anything. I’m mentally tired of feeling unwell at this point also. I just keep telling myself this isn’t forever, it’s just a season. A friend of mine who is a doctor shared some very helpful words that lying around and resting is leisure regularly but right now it’s work. It’s work to rest to let your body cope with the chemo. How are all of you holding up?
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@daisysmum thanks for sharing your latest updates. I am with you entirely on the part about telling ourselves this won't last forever. I have only done one infusion, and I finally felt clouds parting and closer to normal on day 8. But until then I was definitely also feeling sad about feeling unwell, and frustrated too. I have another week and half till I have to go back for infusion 2 and I'm dreading it. I'm also signed up for a daily mediation training class (virtual), and I really think that will help because that again is this whole issue about "this is temporary" and "this won't last forever." Hang in there, all!
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I am headed into my 3rd treatment tomorrow. I am struggling knowing I still have 13 more treatments but I am focusing on the silver lining of only one more AC treatment after tomorrow. I'm tired of not feeling 100%. I am battling some emotions this past week/weekend. I am officially bald and covered in surgery scars. Before my diagnosis i had zero health issues. Never even been in a cast for a broken bone before. I hate seeing myself in the mirror. I spent the week with my family in Colorado and the altitude killed me. Seeing them living their best lives made my heart so happy but simultaneously broke it because I was missing making memories with them. I was just alone and so lonely. We ran into someone my husband knew that he introduced me to, and I had a scarf on my head and a mask on my face. I oddly was ashamed and embarrassed for him because i am his wife, the quintessential "cancer patient". I overall have been managing the process well and had a positive perception of the journey so these feelings are all pretty new for me. I am trying to just embrace them and work through them because I do believe I will be on the otherside and not continue to waller in my own sadness. But dayum, this sucks.
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@daisysmum were you able to continue the treatment after they gave you the Benadryl? My inpatient infusion went okay so they're doing outpatient for the next one but with a 3 hour drip instead of the typical one hour. Hopefully, you were able to continue and all goes well with your next treatment.
@lg2009 I understand your feelings about looking like a cancer patient. So far I've managed to keep a sense of humor about it but I'm sure eventually I'm going to get sick of it and impatient to get back to normal.
I'm giving myself a treat after each chemo round (like a new purse) so I have some reason to look forward to getting through the treatment. A week or more of side effects, but a new pair of earrings.
Hang in there everyone!
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@bonkster yes thankfully I was able to finish my drip without another reaction after the Benadryl and famotidine. I meet with my oncologist next week to see if they want me to take anything like that in advance of the next treatment to try to prevent another reaction or take a wait and see approach to see if it happens again. But no word of stopping this treatment so far so that's good. I like the idea of giving yourself something to look forward to after each treatment!
@heavens that's such a good way to put it about the clouds parting on day 8. I call that first 8-10 day window after chemo 'the funk' when my side effects are worst and also when I just don't feel myself or human. It's that general sense of malaise even when I'm managing the specific side effects with other medications.
@lg2009 it is so tough not looking or feeling like yourself or being able to do the things that you are used to - that make you feel like you! It's 100% okay to feel all the feelings, good and bad about what you're going through because it does suck.
You are all amazing, strong, beautiful women. Keep doing whatever you need to do to cope through this really difficult journey. Love & healing to you all.
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@daisysmum I'm so glad you were able to finish your treatment! I've heard a lot of stories like that and don't understand why my doctor immediately stopped treatment and had me down inpatient the next time.
Round two was similar in side effects but this time I also got terrible heartburn for 3-4 days and I've had a really unbearable rash for about a week. I'm scared to tell my oncologist about it for fear she'll say/think it's an allergic reaction (super delayed?) and not want me to do my treatment Tuesday outpatient. But I also really want something to treat this!
I really wish I would have listened to my gut about this doctor and met with someone else to see if I was more comfortable with a different one.
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Was coming in here to check on everyone. @bonkster I am sorry to hear you have had a bad rash - do you still have it? I understand your fear, but I do hope you can get it treated. Hopefully, it all resolves quickly for you. I've heard about people having really bad bouts with heartburn, sorry to hear about that as well - but at least that sounds like it has passed (?). I did want to tell you that I am SO GLAD you warned me about the sudden hair shedding - that happened to me starting Friday, and I was so much less panicked because you had already shared that experience.
So I guess what I am saying, is I am thankful to have you all to learn from, and I am SOOOO appreciative that you all are going through this all "with me" xoxox
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Oh good, I'm glad you weren't as panicked about the shedding. I just went through my second big shed, but I had to stop capping so maybe you won't have that.
My rash flared back up. I called my doctor Thursday but didn't hear back so if it keeps up, I may just go to urgent care. It sounds like this is fairly common and easily treated, but only if your doctor will respond to you! It's so frustrating that with everything else we have to go through, it can be this hard to get relief for side effects!
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@bonkster that really sucks that you’re not able to get timely care from your doctor. I wonder if it’s not too late to ask to see someone different?
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My final treatment is a week from Tuesday, so I'll stick it out. What I'm unclear on is what role my oncologist with play post-chemo. If it's still a fairly large one, I think I will have to see about finding someone else.
I called again after not hearing back for five days. She finally left a message 6 days after my original call telling me to take Zyrtec. Sigh.
Also, my feet and ankles started swelling on Thursday so that's fun. Didn't bother calling my doctor.
It is interesting how my side effects have been totally different that my first and second treatments. Rash and swelling but no back pain or mouth sores.
And I shaved my head this week.
How is everyone else?
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Hi all,
@bonkster thanks for sharing your update. Congratulations on reaching the final treatment! Major milestone! Just hang in there - you shouldn't have had to wait so long to hear from your Dr. but I also think they really don't have many answers - I also got the "take Benadryl" solution for weird back and hip pain after my 1st treatment. Glad to hear you're not experiencing back pain or mouth sores - cheers to that at least. I am halfway through the 4 treatments and the recovery after the 2nd session was not nearly as rough as I'd expected. I have noticed that during workouts (I'm trying to lift weights a few times a week) my heart rate spikes up like crazy. They said that's "normal" given all of the chemo drugs etc.
I could be wrong, but I think after the chemo your relationship with that oncologist will wrap up for the most part. Are you doing radiation? I can't remember. I am slated to do radiation, and it's a different oncologist for that. But who knows what your situation will be.
Also, my mom told me about this cookbook which I've checked out from our library - it looks really good! "The Cancer Fighting Kitchen" by Rebecca Katz. They include specific guidance for the types of meals you could try during chemo.
I hope everyone stays as strong as possible - take care!
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@heavans I am also having the heart rate issues. I told my cardiologist about it and he wasn't too concerned. Obviously, if it's still an issue after chemo, he wants me to come back but for now, this is just another topping on the chemo Sunday. I do wish they'd give us more of a heads up on some of the scarier side effects though!
I will be doing radiation. I met the radiologist and like him quite a bit so far.
So far round three has had the most unusual and longest lasting side effects. Thankfully the foot and ankle swelling only lasted two days. But my taste is taking its sweet time coming back. The rash isn't as bad but still hanging in.
Round 4 is Tuesday so I'm curious to see if anything new happens and how long it takes to start feeling normal. At this point, exhaustion is the thing I'm expecting to stick around the longest. But I'll let you know.
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Is it qrong I'm jealous of you all being almost done with chemo?!?! I govuntil JUNE. I did finish my AC phase last week. Thank. Goodness. I start my next chemo, taxol, tomorrow. Hear people have reactions so hoping it's not me. I go every week for this one so I've actually had to find a second oncologist locally so I can move my treatments to my home town. I'm tired of traveling and miss my kids too much to do this weekly for 12 weeks. Hoping the change will lift my spirits some.
Im pretty lonely. I've basically be home bound with the AC and crazy flu season so I'm hoping now with taxol and flu behind us I can start socializing a bit more.
I can't figure out what to do with my bald head. I look like a freshly seeded chia pet. I'm definitely bald, but also there's hair there.... ive tried to wear my wig but just can't seem to. It feels too tight.
I meet my radiation oncologist next week to see if I have to do radiation. Man i hope not. But I bet I do.
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Not wrong at all. I'm sorry it's been so rough and you still have a ways to go. Hopefully the new treatment is kind to you and you can get out some.
Is your wig adjustable? I had mine for several weeks before I realized it had adjustable Velcro straps inside. I also got a headband wig. It's as comfortable as my beanie and it wasn't too expensive. Less than $70 at Headcovers Unlimited. I wear it to the gym even.
Let us know how the new treatment goes. Fingers crossed!
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